First Steps SPOE Directors
November 5, 2015
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Established by the Act to Promote the Education of the Blind
(1879)
Registration of legally blind infants generates federal funds
for educational materials that are available from the American
Printing House f/t Blind
The educational materials are specifically designed for use
with the child who is legally blind or those who serve them
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“Official” registration occurs only once each
year and is based on the child’s enrollment
with First Steps on the first Monday of January
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A registration packet is sent in December
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Children are identified throughout the year
◦ If a child is eligible, funds will be provided once
eligibility is determined and his/her name is
included on the list for the upcoming January
registration
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In December, each SPOE Director is sent a registration
packet that includes:
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A registration form
Instructions for completing the form
A Preliminary List of Infants that may be included
A list of products that can be ordered
SPOE Directors gather data from Service Coordinators
or EI Teams
SPOE Director sends the consolidated list of legally
blind children for their region to Yvonne Ali before
February 1st
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A visual acuity of 20/200 or less in the better eye
with best correction, or
A field of vision of 20 degrees or less, or
A brain disorder or damage that causes the eyes to
function as if the acuities are 20/200
◦ This occurs in many cases of Cortical Visual Impairment
◦ Must be diagnosed by eye care specialist (ophthalmologist
or optometrist) or other medical doctor such as a
neurologist
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Eye report from an eye care specialist
◦ A medical diagnosis alone cannot be used to
establish legal blindness
◦ It can be challenging to determine how to
determine the visual acuities for an infant with a
visual impairment
◦ Eye care specialist frequently uses terms such as
“fix and follow”, “central, steady, and maintained”
◦ Contact Yvonne Ali if you need assistance in
determining the acuity
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Medical report from a medical doctor
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For each eligible child, the following data
must be reported:
Name (first and last name)
County of residence
Date of birth
Measurement of vision in the right eye
Measurement of vision in the left eye
Indicate yes or no whether the child is receiving
services from a certificated teacher of children with
visual impairment (TVI)
◦ Indicate the name of the school district to which the
child will transition at the age of three
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It may have seemed like a lot of work for
what seemed like a few children in the
beginning
It has been successful over time
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2005 - Began registering children in First Steps
◦ Only three children were identified
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2006 – 4 children registered
2007 – 12 children registered
2012 - 32 children registered
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In 2014, 50 children were registered who
were not served by the Delta Gamma Center
for Children with Visual Impairment or the
Children’s Center for the Visually Impaired
◦ Children are currently registered in SPOE Regions 6,
8, 9 and 10. Delta Gamma Center for Children with
Visual Impairment and the Children’s Center for the
Visually Impaired have also registered children in
SPOE Regions 1, 2, 4 and 5.
◦ Products totaling $9,523.00 in Federal Quota Funds
were provided for those children
◦ The most requested products are the light
box/mini-light box which provides a source of
illumination and high contrast background and
available kit materials that may be used to teach a
variety of basic skills
What additional information would be
useful to you and your staff in
identifying and registering children
who are legally blind?
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Contact:
Yvonne Ali
Supervisor
Missouri Instructional Resource Center
[email protected]
314-633-1551
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Deadline for APH Registration is February 1st
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Each Year, in December, the Missouri
Deafblind Technical Assistance Project
prepares for a federal report identifying the
number of children with combined vision and
hearing loss in Missouri. This child count is
commonly referred to as the “Census”.
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Children who are deafblind have combined
vision and hearing loss
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Although the term deafblind implies a
complete absence of hearing and sight, in
reality, it refers to children with varying
degrees of combined vision and hearing loss
The type and severity of losses differ from child
to child
It is important to note that over 90% of the
children with combined vision and hearing loss
have one or more additional disabilities
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A child, birth through 2 years of age, who…
◦ is experiencing developmental delays in vision and
hearing;
or
◦ has a diagnosed physical or mental condition that has a
high probability of resulting in delays in vision and
hearing;
or
◦ is at risk of having substantial development delays in
vision and hearing if early intervention services are not
provided;
or
◦ has an IFSP with recorded vision and hearing (both)
results that are anything but “Pass.”
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Infants and toddlers who are at risk for having a combined vision and
hearing loss due to:
A hereditary syndrome or disorder, such as CHARGE Syndrome, Cornelia de
Lange Syndrome, Cri du chat Syndrome, Down Syndrome, Hurler Syndrome,
Klippel-Feil Syndrome, Trisomy 13, Trisomy 18
Pre and post-natal conditions, such as Fetal Alcohol Syndrome, congenital
infections (syphilis, rubella, CMV, toxoplasmosis, herpes, AIDS/HIV), IVH
(brain bleed), PVL (periventricular leukomalacia), hydrocephalus,
microcephaly, meningitis, encephalitis, asphyxia, stroke
Severe head injury (Shaken Baby Syndrome) and/or direct trauma to the eye
and ear
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Premature birth (low birth weight, Retinopathy of Prematurity or ROP)
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Family history of both vision and hearing loss
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Multiple disabilities
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It also includes infants and toddlers with a
documented or suspected vision or hearing loss
who demonstrate behaviors that might indicate a
combined sensory loss. Some of these behaviors
include:
◦ Balance problems, bumping into or tripping over objects
◦ Inconsistent responses to sounds or visual images
◦ Communication by biting, hitting self or others,
throwing objects, screaming
◦ Light gazing
◦ Tactile sensitivity
◦ Overactive startle response
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Materials are mailed in early December
Census forms are due by February 1, 2016
for the annual federal report
However, a newly identified child may be
added to the census at any time
Children identified with “further testing
needed” will need to have documentation
completed within one year…or be removed
from the census the following year
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In 2012, twelve children, ages birth through
age two, were identified with combined vision
and hearing loss and referred via the child
count; all of these children were from the
metropolitan St. Louis and Kansas City areas
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In November 2012, information on the benefits of
the child count for children, families and service
providers was shared with you, the SPOE directors
As a result, in 2013, 70% of the SPOE regions
identified and reported children in their service
areas
21 children were identified and referred for
inclusion on the child count; this was a 75%
increase in identification and reporting
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Subsequent to reviewing child count
information with you in November 2013, 28
infants with combined vision and hearing loss
were identified and referred for inclusion in
the child count data; a 33% increase from the
year before
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Twenty-four (24) children (B-2) with
combined vision and hearing loss are
currently registered in SPOE Regions 1, 2, 3,
4, 5, 6, 7 and 8
◦ 80% of Regions
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Children B-2 comprise 11% of total child
count
The Project tracked and registered all seven
children who transitioned from Part C to
Part B this year
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Delta Gamma Center for Children with Visual
Impairment reports most of the children in the St.
Louis metro area
Children’s Center for the Visually Impaired reports
most of the children in the Kansas City metro area
Reporting is still needed of children in these areas
not served by these agencies
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Regions 1and 2: Greater St. Louis and St.
Louis County SPOEs
◦ One family attended a session on The Importance of
Hands and Touch
◦ One family received technical assistance as their child
transitioned from Part C to Part B
◦ Four families are active in a deafblind parent group
◦ Two parents serve on the Deafblind Advisory
Committee
◦ A team is scheduled to participate in this year’s Hand
In Hand course
◦ Eleven providers are registered to attend an upcoming
workshop on Assessing Communication
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Region 3: Northeast SPOE
◦ Two providers are registered to attend an upcoming
workshop on Assessing Communication
◦ One provider has applied to this year’s Early
Intervention for Infants and Toddlers with Vision
Impairment and Their Families course
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Region 5: Kansas City SPOE
◦ Five providers attended a session on The
Importance of Hands and Touch
◦ A team is scheduled to participate in this year’s
Hand In Hand course
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Region 6: Central Missouri SPOE
◦ One family and seven providers attended a session
on The Importance of Hands and Touch
◦ A team is scheduled to participate in this year’s
Hand In Hand course
◦ One family accessed the Family Involvement Fund
to attend the International CHARGE Conference
◦ A provider is registered to attend an upcoming
workshop on Assessing Communication
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Region 7: Southwest SPOE
◦ One provider just completed training to become a
parent advisor in MoSPIN (Missouri Statewide Parent
Involvement Network) which provides parent training
to families of young children with VI including those
with multiple disabilities and/or deafblindness
Region 8: South Central SPOE
◦ One family and ten providers attended a session on
The Importance of Hands and Touch
◦ Three teams participated in the Hand In Hand course
and one additional team is planning to attend this
year’s course
◦ A provider is registered to attend an upcoming
workshop on Assessing Communication
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Region 10: Southeast SPOE
◦ Two providers are registered to attend an upcoming
workshop on Assessing Communication
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Return all completed census forms by
February 1, 2016 to:
Susan Bonner
Missouri School for the Blind
3815 Magnolia Avenue
St. Louis, MO 63110-4099
Assessing Communication of Children with
Deafblindness and Significant Disabilities and
Using Results to Plan Instructional
Programming
With Phillip Schweigert
Monday, December 7, 2015
St. Louis, MO
Contact: Susan Bonner
[email protected]
314-633-1553
What additional information would be
useful to you and your staff in
identifying and referring children with
combined vision and hearing loss?
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Contact:
Susan Bonner
Project Coordinator
Missouri Deafblind Technical Assistance Project
[email protected]
314-633-1553
It is the policy of the Missouri Department of Elementary and Secondary Education not to discriminate on the basis
of race, color, religion, gender, national origin, age, or disability in its programs or employment practices as required
by Title VI and VII of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, Section 504 of the
Rehabilitation Act of 1973, the Age Discrimination Act of 1975 and Title II of the Americans with Disabilities Act of
1990.
Inquiries related to Department employment practices may be directed to the Jefferson State Office Building,
Human Resources Director, 8th floor, 205 Jefferson Street, P.O. Box 480, Jefferson City, Missouri 65102-0480;
telephone number (573) 751-9619 or TYY (800) 735-2966. Inquiries related to Department programs and to the
location of services, activities, and facilities that are accessible by persons with disabilities may be directed to the
Jefferson State Office Building, Office of the General Counsel, Rights Compliance (Title VI/Title IX/504/ADA/Age
Act), 6th Floor, 205 Jefferson Street, P.O. Box 480, Jefferson City, MO 65102-0480; telephone number (573) 526
4757 or TTY (800) 735-2966.
Anyone attending a meeting of the State Board of Education who requires auxiliary aids or services should
request such services by contacting the Executive Assistant to the State Board of Education, Jefferson
State Office Building, 205 Jefferson Street, Jefferson City, MO 65102-0480; telephone (573) 751-4446 or
TTY: (800) 735-2966.
Inquiries or concerns regarding civil rights compliance by school districts or charter schools should be directed to
the local school district or charter school Title IX/non-discrimination coordinator. Inquiries and complaints may also
be directed to the Office for Civil Rights, Kansas City Office, U.S. Department of Education, One Petticoat Lane, 1010
Walnut Street, 3rd floor, Suite 320, Kansas City, MO 64106; telephone: (816) 268-0550; TDD: (877) 521-2172.